Abstract
Background
Caregivers of people living with dementia (PLWD) often experience burden based on their care recipients’ symptoms of wandering, disorientation, and agitation.
Objective
To examine the utilization and perceived value of technology-based solutions for caregiving among caregivers of PLWD.
Methods
In collaboration with three Texas sites, PLWD and family caregiver dyads were recruited from clinical and community sites to assess the feasibility of a caregiving technology. PLWDs were asked to wear a GPS-based wearable device, which was paired with caregivers’ smartphone application, that enabled location monitoring and was equipped with call functions. After three months, researchers called caregivers to ask about their utilization of the “system” (i.e., wearable paired with smartphone application) and the perceived value of this technology. Forty-one caregivers completed follow-up telephone interviews.
Results
About 70% of caregivers reported their care recipient wore the wearable device daily, and 39.1% used the smartphone application daily. Approximately 31% of caregivers reported daily use of the tracking feature, 30.8% reported daily use of the “safe zone” feature (i.e., geo-fencing), and 17.1% reported daily use of the two-way calling feature. About 39% of caregivers were extremely satisfied with the “system,” 43.6% found it extremely easy to use, and 46.2% found it extremely useful for caregiving. On average, caregivers with higher baseline Zarit Burden Interview scores found the “system” to be more useful with their caregiving (f = 5.97, p = 0.006) and were more satisfied with the “system” (f = 3.75, p = 0.034).
Conclusions
Findings suggest caregiver burden may drive the perceived usefulness of, and satisfaction with, technology-based solutions.
Introduction
Alzheimer's disease and related dementias (ADRD) are progressive conditions that are growing in prevalence in the United States. 1 Persons living with dementia (PLWD) frequently experience disorientation and agitation, which may place them at increased risk for wandering. 2 Wandering is a situation where PLWD leaves a specific location unexpectedly, resulting in them getting lost or becoming confused about their location. Because PLWD also experience memory loss, difficulty communicating, and challenges with problem-solving, PLWD who wander are often unable to provide essential information necessary for them to be united with caregivers and loved ones.
Concerns about wandering can increase the burden of care among family caregivers of PLWD.3,4 Evidence shows that family caregivers already experience elevated stress levels and worse physical and mental health outcomes relative to non-caregivers, all of which can become exacerbated by additional worry about wandering.5,6 Further, worry about wandering can complicate care demands by increasing the need for vigilant supervision of care recipients. As such, practical and innovative solutions are needed to reduce caregiver burden and alleviate family caregivers’ concerns about wandering and other potential risks posed to PLWD under their care.
Emerging technologies for caregiving have become more predominant in recent years with a growing appreciation of their differential use within specific populations and across diverse socioeconomic groups. 7 A national survey of caregivers revealed gaps in self-reported technology use (e.g., devices, functions) between caregivers and care recipients as well as the characteristics associated with different technology use patterns. 8 Technology applications for dementia are rapidly expanding for the purposes of diagnosis, assessment and monitoring, functional maintenance, leisure and activity, and caregiving management. 9 A recent research collection dedicated to caregiving technology 10 contained examples about how technologies can be tailored to either PLWD, their family caregivers, or both, to reduce care burdens and enhance quality of life. Currently, there is an abundance of dementia wander safety products on the market. 11 However, limited research exists about how dementia caregivers actually use these products, especially technologies designed to improve the caregiver's situational awareness about wandering events by understanding when, where, and why an older adult may need attention. 12
Such technological solutions include wearable global positioning system (GPS)–enabled devices and ambient non-invasive sensors, which have been shown to alleviate caregiver burden and assist family caregivers to reduce emotional strain. 13 Yet, additional testing in real-world situations is needed to document the utility of monitoring technologies for family caregivers of PLWD. 14 In this context, the purposes of this pilot study were to examine family caregivers’ ratings about the usability and user satisfaction of an innovative wearable technology to monitor wandering behavior among their care recipients with ADRD.
Methods
This pilot study was funded by the Texas Alzheimer's Research and Care Consortium (TARCC) to assess the feasibility, usability, and user satisfaction of a technology-based approach to assist in monitoring the location of PLWD and their interactions with caregivers. The technology tested was a “system” developed by Theora® Care that includes a wearable device that is paired with a smartphone application. The device was engineered to increase situational awareness for both the caregiver and PLWD. 15
More specifically, PLWD were asked to wear a GPS-based wearable device (resembling a smartwatch), which was paired with caregivers’ smartphone application that enabled location monitoring and on-demand communication. The wearable device was equipped with a gyroscope and accelerometer and SOS emergency calling. The smartphone application allowed family caregivers to monitor the GPS location of the wearable device, create “safe zones” through geo-fencing, enable “quick connect” two-way talking through the wearable, and receive push notifications. Paired together the “system” allowed caregivers to know the location of their care recipient, set physical boundaries that triggered smartphone notifications when crossed, and enabled immediate communication with care recipients in wandering instances.
This multi-site collaboration included investigators from three institutions: Texas A&M University; The University of North Texas; and The University of Texas at Austin. Each institution was responsible for coordinating participant recruitment, consenting participants, and managing local data. Additionally, Texas A&M University served as the lead coordinating site and was responsible for overall data management. After establishing study protocols and screening instruments, family caregivers of PLWD were recruited from study sites. To be eligible for the study, care recipients were required to be community-dwelling. Family caregivers were required to self-identify as the primary caregiver for the PLWD, own a smartphone, and report they worry about their care recipient wandering. Family caregiver and care recipient dyads were enrolled in the study to assess the usability and satisfaction of using a technology “system” to monitor wandering behavior. Written consent was obtained from family caregivers to participate in the study, and consent or assent was obtained from care recipients based on their cognitive abilities.
After consenting, project staff helped caregivers download the smartphone application and provided an onboarding training (including brief videos) about the features of the “system” (i.e., the smartphone application and wearable device). Next, family caregivers completed a baseline survey to document their caregiving circumstance, relationship to the care recipient, concerns about wandering, caregiving burden, and perceptions about using technology to assist with caregiving. Project staff conducted telephone calls to caregivers three months after baseline to assess their use of the “system” and perceptions about the usefulness of and satisfaction with the “system.” Technology support was available to the project staff and study participants, as needed. The project was implemented from September 1, 2018, to December 31, 2021. Institutional Review Board (IRB) approval was obtained from all three participating universities (#2018-1372F).
Measures
Personal characteristics. At baseline, caregivers were asked to report information about themselves and their care recipients (e.g., age, sex, ethnicity, race, education level). Caregivers were also asked to report their relationship with the care recipient and estimate the number of hours they provide care weekly.
Caregiver burden
At baseline, caregivers completed the Zarit Burden Interview, 16 which is a 12-item scale used to assess feelings of burden associated with caregiving. Each item was scored on a 5-point Likert scale with responses ranging from “never” (scored 0) to “nearly always” (scored 4). Scores were summed to create a composite score (range: 0 to 48), with higher scores indicating more burden.
Frequency of system features used
At 3-month follow-up, caregivers were asked to estimate the frequency in which they used the “system.” More specifically, they were asked how often: (1) the care recipient wore the wearable device; (2) they used the smartphone application; (3) they used the tracking feature; (4) they used the “safe zone” feature; and (5) they used the two-way calling feature. Response choices for these items were “not at all,” “less than once a day,” “once per day,” and “multiple times per day.”
Perceptions about the system
At 3-month follow-up, caregivers were asked to give feedback about the “system.” More specifically, they were asked: (1) how easy was the “system” to use; (2) how useful the “system” was for caregiving; and (3) how satisfied they were with the “system.” Response choices for these items were “not at all,” “somewhat,” and “extremely.”
Statistical analyses
Descriptive statistics were calculated for all available baseline data. Associations between baseline caregiving burden (continuous), frequency of “system” use features (categorical), and perceptions about the “system” (categorical) were assessed using Spearman Rho coefficients and one-way ANOVA for participants with matched baseline and 3-month follow-up data (n=∼41). Relationships were considered statistically significant at p < 0.05.
Results
Of the family caregivers in this study, the average age was 66.13 (+11.96) years. Among these caregivers, 78.7% were female, 92.1% were non-Hispanic, 95.2% were Caucasian, and 61.9% had a 4-year college degree or more. Of the care recipients in this study the average age was 76.77 years (+8.04). Among these care recipients, 57.6% were male, 90.5% were non-Hispanic, 96.8% were Caucasian, and 58.7% had a 4-year college degree or more. About 79% of caregivers reported living with their care recipient, and 70.8% reported the PLWD lived in a single-family home or apartment. One-in-three (66.7%) of caregivers reported they were the spouse or partner of the PLWD, and 28.6% reported the PLWD was their parent. Caregivers estimated providing 5.76 (+4.15) hours of care to the PLWD each day (i.e., estimated 40.32 h per week).
Table 1 presents the frequency of “system” features used during the study. Seventy percent of caregivers reported that their care recipient wore the wearable device at least daily. Thirty-nine percent of caregivers used the smartphone application daily, 31.7% used the tracking feature daily, 30.8% used the ‘safe zone’ feature daily, and 17.1% used the two-way calling feature daily.
Frequency of system features used.
Table 2 presents the caregivers’ perceptions about the “system.” About 44% of caregivers reported the “system” was “extremely” easy to use, 46.2% reported the “system” was “extremely” useful for caregiving, and 38.5% reported being “extremely” satisfied with the “system.” Relatively few caregivers perceived the system to be “not at all” easy to use (15.4%), “not at all” useful for caregiving (12.8%), or that they were “not at all” satisfied with the “system” (10.3%).
Perceptions about the system.
Table 3 reports associations between caregivers’ baseline caregiver burden, frequency of “system” feature use, and perceptions about the” system.” Significant positive correlations were identified between baseline caregiver burden and more favorable perceptions about the “system” (i.e., easy to use, useful for caregiving, satisfaction). These findings are reinforced by one-way ANOVA showing higher baseline burden scores for more favorable categories of “system” perception. No significant relationships were identified between baseline caregiver burden and frequency of “system” feature use.
Caregiver burden by system feature use and perceptions.
Discussion
This pilot study examined the feasibility for, utility of, and perceptions about a technology-based solution for caregivers worried about wandering behavior that included several monitoring features. While this pilot was not intended to study the impact on caregiver burden, distress, or other psychosocial factors seen in other studies of dementia caregiving, 17 its findings suggest that caregivers were receptive to the “system” and found it useful for use with their care recipients. These findings are encouraging; however, future studies are warranted to examine the effectiveness of this “system” and other caregiving technologies on caregiver strain, wandering, and related outcomes of interest.
The reported frequent utilization of the paired GPS-enabled wearable device and smartphone application over a 3-month period suggests the feasibility of this “system” for prolonged use. A large percentage of caregivers reported their care recipient with cognitive impairment wore the wearable device daily (70%), although the caregivers reported using the smartphone application features less frequently (i.e., daily smartphone application feature uses ranged from 39% to 17.1%). This suggests that caregivers benefited from knowing the PLWD was wearing the device, and that notifications would be sent as needed; however, there were fewer daily needs for features like location tracking, geo-fencing, or two-way calling. These findings may have been partially influenced by the study's overlap with the COVID-19 pandemic, where community mobility was less because of restrictions on non-essential services, thus reducing the need for vigilant supervision outside the home while potentially increasing caregiver stress. 18
Encouragingly, a substantial proportion of caregivers reported the “system” was extremely easy to use (43.6%) and useful for caregiving (46.2%), with small proportions expressing problems. Further, most family caregivers reported being extremely (38.5%) or somewhat (51.3%) satisfied with the “system.” These findings suggest that multi-component technological solutions can be adopted and deemed beneficial by caregivers of PLWD, especially where there is feedback and codesign from end-users. 19
Caregivers with higher caregiver burden perceived the “system” to have more usefulness for caregiving and were more satisfied with the “system.” This reinforces the potential benefit of technology-based tools to alleviate stress and worry about wandering amidst other tasks, responsibilities, and caregiving-related burdens. Caregivers with greater burden may be more inclined to seek-out and try caregiving-related products because of their recognition of potential benefits or intensified needs to relieve stress (resulting in better personal physical/mental health benefits and help them provide better care to care recipients). Interestingly, caregivers’ baseline burden was not associated with the frequency of “system” or “system” feature use, thus indicating that caregivers may not have perceived the “system” to be a direct solution to the origins/causes of their caregiving-related burdens. However, as stated previously, when used, caregivers reported the “system” being useful and being satisfied with the “system.” These findings highlight the need for additional qualitative studies to identify caregivers’ perceived drivers, barriers, and concerns associated with “system” use in the context of their caregiving situation and circumstance.20,21 Such research may guide efforts about the relative benefits of technological solutions for caregiving when used independently, or in conjunction with or as complements to other evidence-based programs. Additional studies are recommended to engage a diverse set of caregivers, in terms of cultural, geographic, and socio-economic characteristics, to better understand the generalizability of the “system” and factors driving its uptake and perceived benefits.
Limitations
This small but promising pilot study was conducted during the COVID-19 pandemic; therefore, findings may not be widely generalizable to other populations and settings. Although the study included both male and female caregivers and care recipients, respectively, participants were primarily White, non-Hispanic, and college educated. This emphasizes the need for further studies to explore the feasibility and use of caregiving technology within more diverse populations nationally. It also emphasizes the need to consider the potential unintended consequences related to widening the technology gap by promoting technological solutions that may be inaccessible or unaffordable to caregivers in less affluent socio-economic groups.22,23 With a focus on usability, this pilot study did not measure technology effectiveness in terms of managing wandering, reducing caregiver stress, or minimizing community resources. However, using a similar technology, a 50% reduction in service calls for missing PLWD was reported by the Sumter Sheriff's Office, which serves the largest retirement community in the world (i.e., the Villages). 24
Conclusion
Overall, this pilot study suggests that caregivers of PLWD found the “system” to be usable and report high levels of satisfaction, especially among those with higher baseline caregiver burden scores. Ease of use, perceived usability, and satisfaction are key factors in technology adoption.25–28 There is now a plethora of technology “systems” on the market for PLWD and their caregivers. 29 Additional research efforts are needed to assess the utility of technology-based tools, and their helpful features, for caregivers of PLWD under different circumstances. 30 Future research is warranted to understand which wearable or ambient non-invasive sensor features best meet the diverse needs of PLWD and their family caregivers, whether it be for reducing agitation and wandering behaviors, enhancing social connections, or for detecting adverse events (e.g., falls). 31
Footnotes
Acknowledgments
We thank our technology partners, Theora® Care, for providing access to their Theora Connect™ Smartwatch and smartphone “system” for this funded project.
ORCID iDs
Author contributions
Matthew Lee Smith (Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Writing – original draft; Writing – review & editing); Ashley D. Wilson (Project administration; Writing – review & editing); Janice Knebl (Funding acquisition; Investigation; Project administration; Writing – review & editing); Robin C Hilsabeck (Funding acquisition; Investigation; Project administration; Writing – review & editing); Kristen Reuter (Project administration; Writing – review & editing); Alyssa Aguirre (Project administration; Writing – review & editing); Barbara Harty (Project administration; Writing – review & editing); Chung Lin Kew (Project administration; Writing – review & editing); Shinduk Lee (Project administration; Writing – review & editing); Marcia G. Ory (Conceptualization; Funding acquisition; Investigation; Project administration; Writing – original draft; Writing – review & editing).
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this study was provided by the Texas Alzheimer's Research and Care Consortium Grant Program (#M1900615).
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data availability
The data supporting the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.